Why We Keep Telling the Story of ME to the Press
Our press work continues to drum a strong beat as we tell the story of ME everyday to the media. We will continue to fight for our community’s decades of expertise living with, treating and researching ME to be heard, and integrated into our government’s Long COVID response. We refused to be erased from the
5 thoughts on “U.S. Votes to Track ME/CFS on BRFSS Survey”
ME is clearly an infectious disease and scientists must start looking at the saliva from patients because it is being passed around casually.
ME Action, you are unstoppable, so impressed. You give hope to us and thank you!!
Excellent news! I was diagnosed with ME/CFS and then the doctors and nurses can’t remember what it’s even called. I keep getting asked “what is the name of that thing that youve got? ” to wit I reply, then explain the punctuation, and they type it in… next they say “There’s no code for that. I need the other things you have to make you eliguble for….”
This is a much needed thing. We need to be tracking this, because I’m almost certain it’s contagious and that is frightening.
I hope that the data is good. Asking people if they have Chronic Fatigue Syndrome on a survey is likely to be very inaccurate because people mix it up with all sorts of other conditions or just tiredness.
I thought the phrasing was “Have you ever been DIAGNOSED with ME-CFS? and:” If so, are you still sick? “? Those are specific to a doctor having made the diagnosis, not a claim from someone. This would leave out a possibly as yet undiagnosed ME-CFS patient as well. That very fact underscores why we need to be tracking this somehow officially. It will raise awareness of the medical community, our government, etc. and lead to more research, faster diagnosis of patients who may still have a chance to stop the diseases progress. I’m excited!
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